The Superficial Siderosis Research Alliance was organized during the summer of 2019 and began operations in early October. Our initial fundraising effort began in earnest in November, and we ended 2019 much further than we imagined. We began expanding our educational, organization, and patient registry websites in 2020 to provide a permanent 24/7 resource to our community. In addition, leadership advocated with congressional members during legislative meetings on a federal level.
2021 saw the expansion of our global Superficial Siderosis Patient Registry to go beyond a simple registration site into a full-service clinical research support system. The patient registry implemented a research database with the capability to connect worldwide. In addition, the SSRA rolled out video conferencing for organizational use and patient/caregiver support.
Finally, our second education and information brochure for the benefit of the superficial siderosis community was made available on request in US/Canada, UK, and AU versions. The popularity of the brochures necessitated a second printing of the US/Canada version (just delivered), so we are now able to fill requests once again. The second printing of the U.K version is also on the way to the printers.
On The Horizon
The SSRA now has two fully developed research projects (and one in progress) ready for funding. In addition, we’ve completed our first application to the FDA for a funding grant. We have also begun expanding our Medical and Scientific Advisory Board with global members and research partners located at some of the most prestigious medical institutions in the world. Watch for an upcoming announcement of our newest members.
2021 Annual Report
Our 2021 Annual Report, financial information, and 990ez tax return are now published and available for your review on the SSRA website. Again, we want to thank Samuel P. Verhulst, CPA, Charter Capital Management Inc., for assisting the SSRA with our federal and state reporting obligations.
We encourage everyone to read the 2021 Annual Report as it outlines our plans for the remainder of 2022 and beyond.
FDA Grant Application
In February, Rori completed a study proposal and submitted our first FDA application for funding for Efficient and Innovative Natural History Studies Addressing Unmet Needs in Rare Diseases (R01) Clinical Trials Not Required. Our study is titled “Natural History Study of Infratentorial Superficial Siderosis Type 1 (Classical) and Biorepository for development of evidence-based clinical criteria and therapeutic strategies“. The FDA Scientific Merit review should be complete by the first of July. We will update you once we have any news. Fingers crossed and positive thoughts!